Impact of Lipodystrophy on Quality of Life of People Living With HIV- Survey Results

1. How old are you?
	answered question		1,325
	skipped question		6
		Response Percent	Response Count
Under 15 years old		0.3%	4
15-20		0.2%	2
20-25		0.5%	7
25-30		1.7%	23
30-35		4.8%	63
35-40		7.8%	104
40-45		23.1%	306
45-50		22.6%	299
50-55		20.8%	275
55-60		11.4%	151
Over 60		6.9%	91

DownloadCreate Chart2. What is your ethinicity?
	answered question		1,325
	skipped question		6
		Response Percent	Response Count
White		78.4%	1,039
Black		7.7%	102
Latino		9.1%	121
Asian		1.7%	22
American Indian		0.8%	10
Other		2.3%	31

DownloadCreate Chart3. What is your gender?
	answered question		1,325
	skipped question		6
		Response Percent	Response Count
Female		12.4%	164
Male		87.2%	1,155
Transgender		0.5%	6

DownloadCreate Chart4. How long have you known that you are HIV positive?
	answered question		1,325
	skipped question		6
		Response Percent	Response Count
Under 5 years		10.1%	134
5- 10 years		14.1%	187
10-15 years		20.8%	276
15-20 years		27.7%	367
over 20 years		27.2%	361

DownloadCreate Chart5. Are you currently taking HIV medications?
	answered question		1,325
	skipped question		6
		Response Percent	Response Count
Yes		94.9%	1,258
No		5.1%	67

DownloadCreate Chart6. If you are taking or have taken medications for HIV, how long have you taken them (total years)?
	answered question		1,288
	skipped question		43
		Response Percent	Response Count
Under 5 years		15.0%	193
5-10 years		21.1%	272
10-15 years		35.3%	455
15-20 years		28.6%	368

DownloadCreate Chart7. Have you taken any of these medications in the past?
	answered question		1,170
	skipped question		161
		Response Percent	Response Count
Zerit (D4T)		83.6%	978
AZT		78.7%	921
Crixivan		50.3%	589
High dose Norvir		37.1%	434
Hydroxyurea		11.2%	131
DDI (videx)		55.0%	644
DDC (Hivid)		29.4%	344

DownloadCreate Chart8. Have you had body shape changes after starting HIV medications in the past?
	answered question		1,331
	skipped question		0
		Response Percent	Response Count
Yes		88.7%	1,180
No		11.3%	151

DownloadCreate Chart9. What kind of body changes are you experiencing or have you experienced?
	answered question		1,296
	skipped question		35
		Response Percent	Response Count
Involuntary weight loss/wasting		45.8%	594
Abdominal (Belly) Fat Gain		61.9%	802
Facial Wasting		79.9%	1,035
Butt Wasting		70.3%	911
Veiny Legs or Arms		68.5%	888
Increased Breast Size		21.1%	274
Buffalo Hump (Behind The Neck)		20.9%	271
Increased Neck Size		16.4%	213
Parotid Gland Enlargement (sides of face)		15.7%	203
Other		6.4%	83
Show repliesIf other, please specify			106

DownloadCreate Chart10. Have you experienced depression or anxiety due to the body changes?
	answered question		1,331
	skipped question		0
		Response Percent	Response Count
Yes		88.4%	1,177
No		11.6%	154

DownloadCreate Chart11. Have you ever thought of killing yourself due to your body changes?
	answered question		1,331
	skipped question		0
		Response Percent	Response Count
Yes		26.3%	350
No		73.7%	981

DownloadCreate Chart12. Have you ever thought about not taking your HIV medications or have you ever stopped taking them because of fear of worsening your body changes?
	answered question		1,331
	skipped question		0
		Response Percent	Response Count
Yes		42.4%	564
No		57.6%	767

DownloadCreate Chart13. Have the body changes cause you to: (check all that apply)
	answered question		1,256
	skipped question		75
		Response Percent	Response Count
Stop socializing and going out to meet people		67.4%	847
Stop dating		51.8%	651
Decrease sexual activity		73.9%	928
Increase sexual activity		3.9%	49
Worry too much about people finding out you are HIV+		61.2%	769
Be rejected by potential sexual partners		56.0%	703
Affect your job performance		27.4%	344
Stop looking at yourself in the mirror		58.0%	729
Change your clothing style		56.0%	703
Abuse drugs or alcohol to feel better		18.2%	228
Deplete your finances in search of a solution		29.2%	367
Other		6.7%	84
Show repliesPlease Specify			112

DownloadCreate Chart14. What have you done to try to reverse your body changes? (check all that apply)
	answered question		1,242
	skipped question		89
		Response Percent	Response Count
Exercised more		72.6%	902
Watch what I eat		72.4%	899
Got my face injected with a filler or cosmetic product		40.7%	505
Got my parotid glands treated with radiation		1.4%	18
Took supplements that I heard may help my body fat/muscle		43.0%	534
Used testosterone		45.0%	559
Used human growth hormone		17.1%	212
Used nandrolone (Deca durabolin)		16.1%	200
Used Oxandrin		13.8%	171
Got liposuction		7.2%	90
Got butt implants		1.7%	21
Use padded underwear		13.3%	165
Other		6.6%	82
Show repliesIf other, please specify			118

DownloadCreate Chart15. Have your insurance, ADAP/Ryan White clinic, HMO, health care system (for countries outside the US) and/or supplier patient assistance program paid for ANY of the solution(s) mentioned in the answer(s) in the previous question? (Check all that apply)
	answered question		1,124
	skipped question		207
		Response Percent	Response Count
No one has. I had to pay with my own money		63.2%	710
Yes, my insurance company has		17.7%	199
Yes, my HMO has		4.7%	53
Yes, my ADAP/Ryan White program has		6.9%	78
Yes, my country's health system has		7.9%	89
Yes, a supplier's patient assistance program has		11.1%	125
Show repliesPlease specify what was paid for			279

DownloadCreate Chart16. Have you had facial wasting (lipoatrophy)?
	answered question		1,330
	skipped question		1
		Response Percent	Response Count
Yes		80.3%	1,068
No		19.7%	262

DownloadCreate Chart17. What option have you used to improve your facial lipoatrophy? (check all that apply)
	answered question		1,144
	skipped question		187
		Response Percent	Response Count
I have done nothing		41.3%	472
I have used BioAlcamid		7.1%	81
I have used silicone		6.8%	78
I have used Sculptra (New Fill or polylactic acid)		29.6%	339
I have used Radiesse		5.2%	60
I have used PMMA in Rio, Tijuana or other		4.4%	50
I have switched off from Zerit to Viread, Ziagen, Epzicom or Truvada		31.0%	355
I have switched off from AZT to Viread, Ziagen, Epzicom, or Truvada		12.3%	141
I have taken Uridine (Nucleomaxx)		1.1%	13
Other		8.4%	96
Show repliesplease specify			157

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DownloadCreate Chart18. Do you have or have you had high cholesterol/triglycerides?
	answered question		1,297
	skipped question		34
		Response Percent	Response Count
Yes		65.8%	853
No		28.0%	363
I do not know		6.2%	81

DownloadCreate Chart19. Have you had or do you have higher than normal blood glucose (sugar)?
	answered question		1,297
	skipped question		34
		Response Percent	Response Count
Yes		27.4%	356
No		58.7%	761
I do not know		13.9%	180

DownloadCreate Chart20. Have you heard from your doctor or other sources that belly fat, high LDL (bad) cholesterol, high triglycerides or high blood sugar may affect your health and mortality?
	answered question		1,297
	skipped question		34
		Response Percent	Response Count
Yes		75.5%	979
No		19.8%	257
I do not remember		4.7%	61

DownloadCreate Chart21. Do you think some HIV medications can increase belly fat?
	answered question		1,296
	skipped question		35
		Response Percent	Response Count
Yes		81.8%	1,060
No		0.6%	8
Not sure		15.6%	202
I think HIV causes it, not the medications		2.0%	26

DownloadCreate Chart22. Do you think some HIV medications can increase fat loss under the skin (facial wasting, veiny legs/arms, fat loss in the butt)?
	answered question		1,296
	skipped question		35
		Response Percent	Response Count
Yes		88.8%	1,151
No		0.8%	11
Not sure		6.9%	89
I think HIV causes it, not the medications		3.5%	45

Download23. What do you want me to tell or ask lipodystrophy researchers about what the research needs are for that problem?
	answered question	690
	skipped question	641
		Response Count
Show replies		690